Intermittent Pain with Endometriosis

[Ladydenise]

Hello, my daughter suffers with intermittent pain as well as painful periods. We have previously seen the G.P. and she had a scan but they couldn't find anything wrong. I have seen her this morning writhing it agony in pain that she felt was coming from her womb. She took painkillers at 4am when it woke her and managed to get back to sleep but it woke her again at 9am. She had the same thing the night before. She has an implant and intermittent bleeding, sometimes for a few hours, sometimes for three or four days. Her last "period" finished about four days ago and lasted for about four days. We have kind of self-diagnosed her with endometriosis and have managed todays pain with ibuprofen and paracetamol. From what I have read it would appear that the pain from Endometriosis only comes during a period but we can't think of any other explanation of why she has had the pain this morning, four days after her last "period". Can anyone please advise if you get intermittent pain with Endometriosis, after bleeding or a period? Due to the current situation with Covid-19 we are reluctant to go to the doctors or A&E. Many thanks.

[fdennis07]

Hi there,

Many women suffer with endo pains mainly during their periods due to hormones but this is not always the case. Depending on where the endo is, it can cause chronic pain throughout the month as it may be near the nerves for example or could be affecting other organs in the pelvis such as the bowel and bladder.

Endometriosis isnt seen on an ultrasound and so this method is only really useful at seeing cysts for example on the ovaries. Personally, I think more investigation is needed and maybe your daughter could try being on the contraceptive pill for a while to stop her periods and see if her pain improves? I would definitely arrange a telephone consultation with a GP to discuss options as I know how terrifying each month is waiting for the dreaded pain to begin.

What implant does your daughter have? As maybe pain could be due to this?

Xx

[Ladydenise in reply to fdennis07]

Hello,

Thank you for your message. My daughter has a Nexplanon 68mg implant. It hasn't stopped her periods, they are nowhere near as bad as they were before she had the implant but they are irregular and she has random bleeding. We have already been to the doctors and they didn't seem to be worried, saying this is quite normal. Thank you once again.

[Moon_maiden]

Hi

Don’t avoid seeking help, just in case it’s something else. Doctors are still operating and I’m sure would prefer to be able to help. Explain your concerns to get a referral as well. My circumstances are different, I get pain all the time, which consultant says is due to the endo, but other things such as fibroids are there as well.

Don’t do what I did and ignored painful periods for a long time. It’s something she needs to get checked.

I saw doctor last week, I’d gone for a blood test with the nurse, but dr wanted to check some things from the week before.

It’s really not a problem as long as no symptoms. If virus symptoms go to A&E, but warn in advance.

Hope she’s ok

[Ladydenise in reply to Moon_maiden]

Hello, thank you for your message. We are seeing how it goes, she was ok yesterday but woke again early hours of this morning with the same pain that lasted several hours but we managed to control it with pain killers. I think we do need to ring the doctors, thank you for your advice.

[Bubblepoppy]

Hi I have chronic pain from endo/adeno everyday not just periods the pain with periods are 10x worse, I no longer have periods after having ablation in womb yet still get the pain and the bad pain when due days come up, GP might prescribe something stronger for night times I know how she feels it's horrible especially when it breaks sleep patterns xx

[Ladydenise in reply to Bubblepoppy]

Hello, thank you for your message and sorry to hear to are suffering too. It's a horrible thing.

[Thecrazypugglelady]

I'd definitely keep a diary of what your daughters eaten and drank when the pain is and a score only because it gives them a clearer picture as yo what it might be. I always take my diary with me the amount of times I've had its because you've eaten junk food! Or appendicitis when I've had them out! So that really helps also I have endometriosis pain every day pretty much all the time and i dont have periods anymore so everyone is different but before it got to that stage i was doubled over in pain around ovulation and period my periods again I got an app and logged everything on there so if I was due on I could compare pain etc but i would really keep on taking her back the gp or phoning to log pain etc. It takes a lot of scans and a lot of appointments blood test laparoscopy etc to get a diagnosis so the more information the quicker you might get her the diagnosis she needs obviously everyone is different but from my personal experience that's what's helped me. Good luck though I hope they give her something to manage pain

[Ladydenise in reply to Thecrazypugglelady]

Hello, thank you for your message and advice. I did wonder at one point if it could be appendicitis but it the pain is only in the lower centre of her tummy, across the bikini line. That makes sense to keep a diary, she isn't the best eater in the world so this could be worth considering. Thank you once again.

[Thecrazypugglelady in reply to Ladydenise]

It's good that your daughter has close support! I think it makes it easier to stay positive if someone can be there to understand. No I'm not a massive eater I think when your in pain you feel sick. I had adhesions that contributed once they were removed my appetite has increased but good luck with a diagnosis

[thughesx]

Hi, I was put on the implant at 21 and that aggravated my endometriosis symptoms, making me a lot more poorly, with frequent pain throughout the month, not just during my period. Even now, off the implant (I'm 24, had second surgery in September) and have the mirena coil it is the same for me. I find my worst time for pain is a few days before, during and after ovulation and then a few days before during and after my period. I definitely would push for further investigation, potentially even going privately. I know this is something my mum wished she had pushed for to help me with pain I was in for years with no one listening! Definitely agree with keeping a diary, the Endometriosis website have a PDF diary symptom tracker which is really useful: endometriosis-uk.org/sites/..., also I would recommend tracking food/drink in case there is anything specific aggregating her existing symptoms.

Hope she feels better soon, I constantly have my hot bear that goes in the microwave with me at all times, and that does seem to ease some of the pain. Sending lots of love!

Tyler x

[Ladydenise]

Hello Tyler, thank you for your reply and sorry to hear of all your suffering. The way you describe when you get your pain is quite similar to what my daughter is suffering. We are reluctant to get any appointments at the moment because of coronavirus but I really think after what people have been saying on here that we need further investigation. Sending lots of love to you too! x

[Naila81]

Get an MRI scan done. I had xrays n scans done for years and years to only be told im fine. Suffered with vomit inducing pain during periods and recently even when im not on periods. Finally had a MRI scan and drs discovered cysts on my ovaries, endometriosis AND andeyomyosis. Given 1 prostap injection which has left me with dizzyness soooo bad its making me vomit every night and during days im drained, nauseated and cant eat properly. This starts 5 or 6 days before im due my period and stops the day i bleed. Its side effects from Prostap. Had 1 injection in Feb 2020 and was told will leave system after 2or3 months. Im into month 4 of this ridiculous cycle and wish i had never had the injection. I am allergic to strong painkillers so take paracetamol sparingly andwas due followup gynacology app in april but because of covid never got app. Im glad i found out the root cause of my pain but wish i had known about the side effects and what prostap actually was. Iwas admitted to hospital and had been there 7 days before drs discovered through MRI what i had and because drs were soo busy, they did not explain to me what prostap was, just said it will make my pain better and bleeding lighter. Turned out Not true for me and got other problems on top. 😔